11/14/97

Brain Disorders: Transition After Graduation

Rob's first diagnosis at age 6 was Minimal Brain Disfunction (today known as Attention Deficit Hyperactivity Disorder- ADHD) for which he was placed on stimulant medication until age 13. He developed symptoms of Obsessive Compulsive Disorder and Dysthymia (chronic low-level depression) by age 15. Rob was further diagnosed with Asperger's Syndrome at 18.

A pervasive developmental disorder, Asperger's Syndrome was not well-known in the U.S. until 1994. Rob's unusually well developed language as a child did not lead anyone to suspect a problem until his teen years when his poor social skills became evident.

Children with early onset brain disorder commonly have co-occurring conditions which present complex behaviors and learning problems at school. Too often these children become socially isolated and eventually drop out of school. To prevent such a decline, Rob's educators needed guidance from his parents and treatment specialists every step of the way.

Rob's parents realized that general and special education professionals too often lack the information they need to work with children with brain disorders, many of which are not environmentally caused, but occur because of a genetic predisposition, e.g., bi-polar disorder, schizophrenia, anxiety diorder, Asperger's Syndrome and even ADHD, which may also run in families.

Now 23, and a high school graduate, Rob lives independently, with case management and job coaching support from a community psychiatric rehabilitation program. He has held several part-time jobs; long range he hopes to enter the computer repair/upgrade trade. With family, school and community services pulled together by the vitally important case manager, Rob is learning how to review his options and plan realistically for the future.

The National Alliance for the Mentally Ill (NAMI) proved a valuable resource to Rob's family. NAMI is a national network of families working to improve the lives of children and adolescents affected by neurobiological brain disorders. Among NAMI resources for families are fact sheets about specific disabilities, information about support groups, and a national newsletter called "The NAMI Advocate." The NAMI Helpline, (1-800-950-NAMI) is manned by volunteers weekdays from 9 am -5 pm (Eastern Standard Time). Volunteers provide referrals to local chapters and support groups in communities nationwide and send out requested information on brain disorders and their treatment.

The NAMI webpage has material on a variety of issues, including the latest information on treatments and services. Through a search engine, visitors to the website can seek answers to frequently asked questions about mental illnesses, and learn more about NAMI's advocacy efforts to end stigma and discrimination against children, adolescents and adults with brain disorders.

Please send questions or comments to bbruno@snet.net.

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